For weeks you have been aching from head to foot. You have no energy, you can’t concentrate and you can’t remember the last time you got a good night’s sleep. You have been to the doctor a few times already and all he can tell you is what you DON’T have. You have read about fibromyalgia and even talked to others that have been diagnosed with the disease. Yet, so far, no one can tell you whether you have it or not?
Sound familiar?
Well welcome to the world of fibromyalgia diagnostics. It is bad enough that there is no cure or significantly effective treatment for this condition, but it is even more frustrating when it takes so long for anyone to tell you that the problems you are having are caused by fibromyalgia.
There is no debate as to the validity of fibromyalgia as a disease. In fact, the World health Organization has recognized the disease for many years. It is the diagnosis that is debatable.
Fibromyalgia is a very confusing and misunderstood condition. It has been known by many different names for well over a century but was not termed “fibromyalgia” until the 1970’s. The term is derived from the actual experience of the condition. “Fibro” – which represents the fibrous tissues affected (i.e. ligaments and tendons); “Myo” – representing the muscular system; and “Algia” – meaning “pain,” which is the dominant manifestation of this disease. Essentially, fibromyalgia means being in pain almost everywhere.
Fibromyalgia must be diagnosed through a process of elimination. In other words, before a complaint can be labeled fibromyalgia, it must first be determined that there is not some other cause. If your appendix is inflamed, you have appendicitis. If you fall and bang your head a CT scan will indicate if you have a concussion. But if you ache all over and suffer from chronic fatigue for months on end, have trouble focusing and struggle with anxiety and depression, it must first be determined what you DON’T have rather than what you DO have. Because if you have fibromyalgia, there is no test that will indicate that you have it.
In other words, diagnosing fibromyalgia is difficult.
This process is very contrary to the health care system as currently structured. The optimal level of testing and analysis to reach a confident diagnosis of fibromyalgia can be cost prohibitive. As a result, the symptoms of fibromyalgia can be conveniently dismissed as psychosomatic. Conversely, fibromyalgia can become the catchall diagnosis when there is resistance to traveling the long road to a conclusive diagnosis. Either way, the patient loses.
Sometimes, a patient receives great relief when they are told what the problem is, even if a solution is unclear. Receiving a confidant diagnosis of fibromyalgia may not provide relief but at least it allows the sufferer to move forward to explore treatment alternatives.
The American College of Rheumatology has made this diagnostic process easier for patient and physician by developing criteria for fibromyalgia that can be used in diagnosing the disorder. According to the criteria established by the ACR, a person is considered to have fibromyalgia if he or she has experienced widespread pain for at least three months in combination with tenderness in at least 11 of 18 specific tender point sites. While this may not be as definitive as a blood test or X-rays for other conditions, at least there is guidance that results in diagnosis with a high degree of confidence.
As for treating fibromyalgia… well that’s another story! (I’ll deal with treatments in a subsequent article. Stay tuned.)